We Are All Awkward Unicorns

Earlier this year, CMTA asked for people to organize walks all around the country for CMT awareness. “It would be so great to get Julianna out for something like this,” I thought. I knew she’d love it, but it was the same old story: stupid CMT. It was hard to even leave her room.

After she died, I contacted CMTA. “We want to walk,” I told them. We didn’t have the energy to organize it, but if someone stepped up, we would be there. We’d bring Awkward Unicorn (a Julianna surrogate?) and walk – for her, and because of her.

And it happened. Yesterday, in a park with soaring trees, we gathered for Portland’s first ever CMTA walk.

The weather last week was quintessential gray and rainy Pacific Northwest — but yesterday we got a break.

We had a poncho ready for AwkUni, but didn’t need it.

I said a few things, and learned many more:

It takes guts to wear a tutu! (Especially if you have one…) But compared to what Julianna had to face every single minute of every day, it was nothing.

Believe it or not, this was the first time we came together — in person — with the CMT community. We’ve known for years that Julianna had CMT, but didn’t think to reach out. Yes, we were very busy keeping Julianna alive, but it was more than that.

Our CMT is like a freak of nature. In two generations, it went from almost nothing (Steve) to deadly (Julianna). What does that? (We will have an answer soon – I know it). So even though we had a diagnosis, I didn’t feel that we fit in with the CMT community.

Yesterday, I met and learned of others with CMT who also don’t feel like they fit in. There are over eighty different types of CMT, and there is a wide range of severity even within the same type. Many are the first in their family to be diagnosed. So…none of us “fit in.” We are all awkward unicorns.

CMT is a frustrating disease. It’s hard to explain, hard to predict, hard to diagnose — and I say this as a neurologist and a mother who has suffered the ultimate loss because of this awful disease. I have wanted to throw my hands up in the air many, many times. Except that it killed our daughter — so I can’t. I won’t.

My plea (to the world, but especially to the CMT community) is this: We are each other’s best hope. If we come together, we can beat this thing. If we don’t act, who will?

Whatever you can do — walk, talk, write, give, get people to give, educate, be educated, dye your hair blue — do it. Even if it feels awkward.

Heavy lifting is best done TOGETHER.

Huge thanks to Ori and Debbie (and family) for all the work you did to make this walk possible.

I am a third generation family member with CMT1-A. It was my 89-year-old mother, who also has CMT, and is in a wheelchair, who read the People Magazine article while waiting in a doctor’s reception area this week.

We are very large,12 children, close-knit family. When my mother called me and told me Juliana’s and your families story I researched it further. My mother and I have a strong faith and I am certain that is helping you cope and move forward with the loss of your precious daughter. You are incredible parents for seeing the unique soul and wisdom that was within Julianna.

I hope that through your story and continued efforts to bring CMT research and drug testing to a broader spectrum of people and specialist, the funding to at least curb the progression of the disorder will come to fruition sooner than later.

I love your unifying call to action. It starts off with the CMT community and branches off to people like me, who have never heard of this disease before sharing in Julianna’s life story. And I will tell my friends and they will tell theirs. I pray that great triumph will emerge from the stupid disease that unites you and other families afflicted by it. I pray it’ll be the impetus to change, and that this change is (part of) Julianna’s great and beautiful legacy. Hugs and love to you, Michelle. Keep going!